Food Allergy Counseling

Monday, April 23, 2007

I’m an Allergic Girl but not an allergic mother nor an allergic kid. Most of what I post is about managing life as an adult who advocates for her allergy-free life. However, I’m not completely oblivious, I hope, to the large world of allergic kids and their concerned parents. Not too long ago, I was that sneezing, wheezing, no I can’t come over to your house to play because of fluffy/spike or no I can’t have some of your walnut birthday torte girl. (Ok, no one really served walnut tortes but you get the idea).

And as I, like you, surf through the net with an eye to allergies and asthma, I'm seeing an increase in allergic kids' parents’ questions about how to raise their children to defend against the bullies of this world. [Mrs. Zum posted about this last week as well.]

There have always been bullies, but now PB&Js are the weapons of choice. Who's arming these bullies? The same people who have always armed the playground bully: parents. Parents bullying behavior shows up in the playground, i.e. bully kids are often bullied kids at home. And now we have a new bully to contend with: non-allergic parents’ aggressive attitudes towards kids with allergies.

I don't recall any parents behaving like this when I was a kid. What about the other adults at my school?

The lunch ladies, all named Maria, were sweet and the kitchen was an open affair if I had any questions or needed a substitution. I've distinct memories of hanging out there with the Marias, alot; chicken a la king over rice, yum!

Ah yes, now I remember: the gym department [Yes you, Ms. Corcoran] thought I was lying when I said I had asthma. They shrugged off tons of doctor's notes and made me run in Central Park until I wheezed which didn't take long! That certainly counts as another form of an adult's lack of compassion, understanding, and/or downright stupidity about allergies and asthma.

Sigh, I'd almost forgotten about that, that was indeed a sad time.

Judith Warner in Friday’s NYT gives her opinion on this topic. It’s a Times Select piece but Ms. Scones has supplied me with the text for you below.

April 19, 2007, 5:48 pmMean Grown-UpsBy JUDITH WARNER

There's an absolutely horrifying article in the current issue of Child Magazine about the food fight now raging between parents of children with life-threatening food allergies and parents of the allergy-free. The latter, apparently, have started to push back against "peanut-free" school regulations to assert their children's natural right to eat whatever they darn well please.

The stories are downright chilling: One parent joked on a message board about having his daughter dress as "the Death Peanut" on Halloween. A North Carolina father at a parent-teacher organization meeting said he'd continue to send his child to school with peanut butter sandwiches and "tell his child to 'smear' the peanut butter along the hallway walls." Another father sent his child to school with a "disguised" sandwich that had peanut butter hidden in the middle of the bread.

There are many ways to read this behavior. On the one hand, it reflects widespread ignorance about the scope and severity of some food allergies, and it also reveals plain old laziness. Some parents and educators sense that peanut worries have come to verge on paranoia. And then there's a sense that some parents are going nuts about food generally.

I sympathize with that feeling – up to a point. There was a time a few years ago when I, too, conflated the anxiety of the merely food-averse with the fears of those whose kids were threatened by potentially fatal allergies. A teacher once told me about a preschool mom who took to following her daughter room to room, and screamed at staff members if they didn't walk the halls with EpiPens strapped to their bodies. The teacher felt that this mother was ridiculous, and I did, too. It's easy to turn a quasi-mocking eye on someone who behaves in this way.

That is, it was easy for me until another mother described to me the experience of watching her son nearly die in her arms after an accidental peanut ingestion. Getting into her skin – feeling the fear and vulnerability that drove her to, she admitted, sometimes maddening behavior – changed everything for me. I'd like it if all parents could at some point force themselves to do this kind of mental exercise. Empathy can be painful – but a little goes a long way.

And empathy appears to me now, in much of what I read, to be in particularly short supply, not only among different groups of parents (all those "wars," Mommy and otherwise) but in the increasingly punitive attitudes of school systems and legislators toward parents and, by extension, their kids. Frequently, I find, there seems to be a kind of studied harshness in the air, an in-your-face obtuseness that tries to pass itself off as some sort of virtue or push for justice. I'm thinking particularly now of the "war on obesity," which in some school districts is being waged through letters home to parents or in report cards bearing the bad news about students' body mass indexes. The ostensible goal is to make parents aware that their children's health is at risk, but the real effect has often been, as The New York Times and The Wall Street Journal have reported, to scold parents and humiliate their children. ("Do you think I'm fat?" a fifth grader asked her embarrassed gym teacher after a letter came home showing a low fitness score. "She had never thought that she was heavy," the teacher told the Journal.) Another example: a Texas state legislator earlier this year introduced a bill that proposed bringing criminal charges and up to $500 in fines against parents who failed to show up for scheduled parent-teacher conferences. Once again, the goal was undoubtedly laudable: to increase parents' involvement in their children's education. Yet the heart was missing, the compassion and understanding and willingness to concede that most parents who do not attend school conferences don't because they can't – because bosses, work demands, transportation or other limitations make it impossible. Such considerations make no difference to the would-be sheriffs in our midst, eager to correct the behavior of those deemed too lax or permissive or self-indulgent.

In every case where there are breakdowns of empathy, children are the ones who really suffer. Whether it's the peanut-allergic kids Child Magazine found ostracized in classrooms and cafeterias, or those whose newly-revealed B.M.I. scores crash-landed them into the world of the "fat," or those whose parents are additionally alienated from school districts that consider them near-criminals – it's the kids who fall victim in the crossfire of adult self-righteousness and officiousness. The worst examples of all came from columnist Bob Herbert earlier this month, when he shared stories of six- and seven-year-olds hauled off in handcuffs for "crimes" like throwing a tantrum at school and riding a dirt bike on the sidewalk.

Racism was the ingredient that pushed these incidents to the level of outright horror. Yet, most of the meanness I sense in the zeitgeist right now seems to me to be attributable to a kind of financial and emotional avarice. It is cheaper and easier to send home letters about a child's B.M.I. than it is to bring more and better physical education into the school day or spend more money on better-quality school food. It is hard to show generosity of spirit when you fear that your own family is constantly getting shortchanged.

I think of the woman quoted in the Journal article whose children's school had overhauled its cafeteria offerings in favor of healthier and less-caloric foods and who complained that her kids – athletes not big on fruits and veggies – were "getting the short end of the stick because of the obese kids." I think, too, of the mother I interviewed recently who has two sons in public school — one who gets special education services because he has Asperger's syndrome, and one who's in a "gifted and talented" program — and who must endure repeated digs by other parents over her family's suspect ability to "work the system."

"There's a lot of unrest, let's just say," she told me of her little corner of hell on the schoolyard.

The kinds of parents who willfully and insultingly resist complying with peanut-free rules may simply be people who, in this cutthroat time, respond with a kind of visceral fear and loathing to any child (or parent) whom they perceive to be getting preferential treatment. These parents may be motivated by all kinds of resentments and fears that they cannot name or properly articulate.

14 comments:

A little bit off topic, but still on the subject of allergies. I work in an office where there is a co-worker who has allergies and demands that no one can wear lotion or perfume. Is that ridiculus? I feel it is her harrassing her co-workers about their choice of scent. Sure she may have allergies, but they have mediciation for that now. Give me a break.

Totally on topic! And I’m glad you raised this issue as this is a common question.

If your co-worker is “demanding” a scent-free environment, I’d imagine it’s because she has been frustrated by no one listening to repeated requests to work in an environment where she won’t get sick. HR, the dept that should be most clued into these concerns, is often clueless about them.

I worked in an office where they needed to build a new office room. Workers worked during business hours: drilling, doing electrical writing, outting up sheetrock, painting with oil and acrylic based paint, sanding down surfaces, etc., for weeks. I’m allergic to oil based paint; it activates my allergic asthma. I complained to human resources [located in Texas] who assured me that the work was being done after office hours.

Not only was it NOT being done after office hours but it was interrupting my ability to stay at work: I had to leave because I was getting asthma attacks. They insisted that the contractor assured them work was being done after work hours, I, incredulous, told them I was staring at the workmen working at 11am!

As you can imagine, this went on: the workmen worked, I did not and in a few weeks the work was done and HR had done nothing about my complaint. It didn’t help that the contractor repeatedly lied to them about when the work was being conducted. My bosses were understanding but I was incensed.

So, personally, I don’t think it’s ridiculous to desire to work in an environment where you are not bombarded by scents that make you ill. I believe she is well within her rights to want a work environment where she can work unimpeded.

As for medication, many allergy medications are sedating. And if she’s like me and has allergic asthma, an allergic reaction could lead to an asthma attack, which even if she took an inhaler for, could lead to a dip in her immune system overall and leave her vulnerable to other illnesses, especially in a closed office environment.

Bottom line: this complaint needs to be taken seriously. Do I think all co-workers should be banned from wearing scented lotion and perfume: No. Do I think this woman should be accommodated to the best of the company’s ability, like finding her an office not near a central vent, or out of the way of allergic smells: Yes.

It's amazing to me the debate and anger that these kind of issues have brought about. Our entire society has an "us and them" attitude and this just puts a spot light on it. We don't work together at all. It's my way or the highway. I do think the way the "allergy mom" comes across can sometimes bring about the harsh attitudes, but when you've asked nicely and repeatedly have gotten no cooperation the level of anxiety escalates as does her attitude and then the whole situation blows up. We've seen what can happen today when bullies push people to the edge. We need to stop being so mean to each other and start working together to solve all of these situations. And I do think that most of those grown ups are "creeps", probably in every aspect of their lives (jmho).

Oh, dear. This makes me so sad. And, scared. I've been trying to write a post about our struggles with kindergarten registration, and it keeps coming out a bit more reactionary (for lack of a better word) than I'd like. We don't want to be unfair to other children; we just want Katherine to be safe.

nowheymama--of course you feel reactionary with so much vitrol flying around, and of course you want your child to be safe.

children should be kept safe AND there is only so much a school/office/outside institution can do. there will be times that you will have to step in. however, i'm certain you have taught your child how to take care of herself and will continue to help her on that journey.

write the post, see what happens, maybe you just need to get it out of your system. ;-)

This deserves another online comment. Extremely well written! It does seem so odd now. I knew of kids with nut allergies growing up (not alot mind you), but it seemed so simple then for some reason. Everything I hear now is madness, confusion, and anger. I can't even imagine the fear and frustration that the parent of a food allergic child must feel.

Maryam, not so off topic, when all of a sudden it become "us" and "them" as chupieandj's mama said, the good guys and the annoyances. Not so--we are all one (now I sound like an ad for "the real thing").

A note about perfume (which I adore and wear as often as I can). My dental hygienist is allergic to perfume so she requested on the day I went to her I not wear it....I had 167 other hours in the week I could wear it...so no perfume when I saw her. No biggy, right?

Ditto for a close friend I often see in the evening, a little more of a sacrifice, but really...if it saves her from having a headache, I go without.

I truly doubt your coworker is doing this for harrassment purposes--and I agree she should take it up with HR and perhaps be put in a separate office, but if that's not feasible, can't you all just cool it and go natural during the daytime?

Somehow this PB & J argument reminds me of the smokers who get angry at the non-smokers for not wanting their space polluted by someone else's smoke and insisting on their right to make other people sick. Feh!

P.S. I'm the mom of a grownup with allergies so I truly see the other side and the sometimes dire effects people's selfishness can bring about.

As an adult who has asthma and a severe allergy to peanuts and tree nuts (as well as allergies to animals, pollen, dust, perfumes, etc.), I wish parents on both sides of the issue would use just a little common sense.

What many of the "mean grown-ups" don't realize is that many food allergies don't just make you sneeze a little -- they can kill you. Also, some food allergies are more likely to be fatal than others, and, for some people, being in the same room as the allergen is enough to cause a serious reaction. I can't understand why some parents think that their child's right to eat a peanut butter sandwich in the school cafeteria is more important than another child's right to a safe, non-fatal environment.

However, the parents who want to protect their children from all potential allergens need to show some restraint too. In many cases (especially with peanut allergies), your allergic child will become an allergic adult, so you need to prepare them to deal with food issues on their own. Instead of banning all baked goods and foods that might contain nuts from a school, teach your children not to eat anything that they didn't bring from home or that don't have the ingredients listed.

Issues with food allergies is not limited to schools. I get teased by adults because I always turn down the cookies and candy I'm offered, and I look anti-social when I have to turn down invitations to go to Asian restaurants. For everyone else with food allergies out there, if you don't know about it already, you should check out the Food Allergy and Anaphylaxis Network (www.foodallergy.org).

Thanks for the post and for bringing attention to all this contentiousness, which is only making the kids suffer more. My question is: Where are the doctors in all this? Most of the problem is that many people self-diagnose themselves or diagnose their children on their own as "allergic" to food (or perfume) when they aren't and this leads to a lot of confusion on the part of schools and the rest of the public, sort of too many people "crying wolf". I'm an allergist, and if any of my patients have difficulty at school or the workplace, I write a nice, detailed letter documenting and supporting their requirements which makes the school and the employer very nervous and usually compliant. On the other hand, if there's no evidence for someone's claims to being "allergic", I do not write such a letter.I've posted a brief excerpt from a chapter on the psychological support of patients and families with food allergy on my blog, if anyone's interested.

4/23 anon--thanks for your perspective. although one hygenist asking her client load, who she sees in an small enclosed space is probably alot eaier than asking an entire open office to do the same. but i totally agree, it's not that difficult a proposition.

4/25 anon--it may be less of a "common sense issue" and more of an issue that the public isn't really well educated on what an allergy entails, esp. a potentially fatal reaction. there are even people that still believe that being allergic is all in your head...sigh. troubling. but as people with allergies it's our job, i think, to educate those around us: school systems, office mates, whomever, until they get it.

dr. de asis--thank you for your input. i dont know where the doctors are, excellent question. but as i said in my post my gym teachers literally laughed and threw away countless doctors notes of mine. now that was many years ago and our society was less litigious, perhaps that happens less today.

I had posted about the Child Magazine article recently on my blog as well ... the post was titled 'It Takes A Village - Peanut Terrorists'. I still get chills from the article as the father of a two year who is anaphylactic to peanuts, eggs and (recently discovered) to dogs.

My sentiments were summed up best when I kept coming back to the term 'peanut terrorists' to describe parents who would encourage their kids to spread peanut butter on school railings to protest peanut bans or dress their kid as 'the death peanut' for Hallowe'en. Wow.

My frustration with these people is tempered by my wonder at the fact that they can say these things with conviction. That is incredible. I find it really hard to believe that these people are out there ... sometimes an article like this reminds you that you need to be on your toes at all times.

It Takes A Village to manage severe allergies and clearly these parents play the role of the village idiot.

My work has appeared in national and international media, including: ABCNews; Allergic Living; CNN; Huffington Post; New York Magazine; NY1; The New York Times, The Wall Street Journal and The Washington Post.

Disclaimer

The content on this blog is based on my personal experiences and intended solely for entertainment purposes only. I am not a medical professional and the content on this blog is not to be considered medical advice.